Marquita W. Lewis-Thames’s research while affiliated with Northwestern University and other places

Increasing age and rurality are associated with decreased care coordination. There is a growing interest in the role of digital tools in improving care across the care continuum for rural and older adult groups. Still, little is known about the best practices of rural older adults and digital health tool usability. Guided by a user-centered design approach, we 1) describe multiple strategies to meaningfully engage rural older adults in the development of a digital health tool to improve telehealth navigation and 2) report best practices assessed from our multi-modal iterative design approach. We engaged key informants, including rural older adults, their caregivers, providers, healthcare administrators, and an advisory board. Our mixed methods user-centered design approach triangulated findings through semi-structured interviews, a systematic literature review, tool usability testing, and a MyChart usability analysis using eye-tracking technology. Lessons learned from our analysis reveal that rural older adults readily engage with digital technology and often sustain use after their introduction. Digital health technologies were most commonly associated with relieving access to care and transportation barriers. Reduced internet access and challenges with using the equipment were common usability barriers. Useful strategies to overcome usability barriers include in-person or telephone tutorials and knowledgeable caregivers. Tools to assist rural older adults with technology barriers were limited. As digital health technologies increasingly integrate into rural care coordination, barriers faced by rural older adults must be considered. Research that aims to elevate the voices of rural older adults in digital health tool design is imperative.

Introduction Social determinants of health (SDOH) may impact chronic liver disease (CLD) outcomes but are not clearly understood. We conducted a systematic review to describe the associations of SDOH with mortality, hospitalizations, and readmissions among patients with CLD. Methods This review was registered (PROSPERO ID: CRD42022346654) and identified articles through MEDLINE, Embase, Cochrane Library, and Scopus databases. The review included studies that reported SDOH characteristics within the domains of economic stability, health care access, education, social and community context, and the neighborhood built environment. Associated outcomes of interest were mortality, hospitalizations, or readmissions. The Cochrane Risk of Bias in Non-randomized Studies for Exposure (ROBINS-E) was used to assess study quality and risk of bias. Results A total of 5,205 abstracts were screened, 60 articles underwent full-text review, and 27 articles were included in the final review. Poor economic stability, healthcare access, social support, and household/environmental conditions were associated with higher mortality and hospital readmissions among patients with CLD. Increasing distance (≥25 miles away) from a liver transplantation (LT) center was associated with higher mortality despite increasing access to the LT waitlist. When assessing the overall risk of bias among included studies, most had “Some Concern” (N=13, 48.1%) or “High Risk” (N=11, 40.7%) while a minority had “Very High Risk” (N=3, 11.1%). No studies were categorized as “Low Risk.” Conclusions Unfavorable SDOH were associated with increased mortality and hospital readmissions among patients with CLD. Rigorous empirical research is needed to identify evidence-based strategies that aim to mitigate disparities among vulnerable populations.

Purpose Prostate cancer (PCa) disproportionately affects Black men in the U.S., leading to high incidence and mortality rates. Post-treatment challenges, such as sexual dysfunction and urinary incontinence, significantly impact quality of life yet are frequently overlooked. The purpose of this study was to characterize the experience of treatment-related side effects around sexual function and urinary incontinence among Black survivors of PCa and their caregivers. Methods We conducted semi-structured virtual interviews with 11 Black survivors of PCa and 11 caregivers (22 total participants). Survivors were eligible if they were diagnosed and treated for PCa within the last decade and caregivers were eligible if they self-identified as a caregiver for a Black survivor. Interviews were transcribed verbatim and analyzed using a qualitative descriptive approach. Results During interviews, participants spontaneously discussed topics covering sexual dysfunction and urinary incontinence. Key themes identified from interview discussions included the physical experience of PCa treatment, knowledge of the impact of PCa treatment on life quality, and the process of navigating survivorship care. Although they received peer and familial support, survivors expressed a desire for clinicians to initiate discussions on sexual dysfunction and urinary incontinence. Caregivers recounted their experiences while providing support to the survivor. Conclusions The findings underscore the need for clinicians to prioritize discussions on sexual dysfunction and urinary incontinence with patients, and for enhancement of care pathways and resources for these issues in survivorship care. Implications for Cancer Survivors Trained professionals, such as occupational and physical therapists, social workers, genetic counselors, and psychologists, have the potential to fill this survivorship care gap.

Importance Disparities in patient access and use of health care portals have been documented. Limited research has evaluated disparities in portal use during and after the COVID-19 pandemic. Objective To assess prevalence of health care portal use before, during, and after the most restrictive phase of the pandemic (2019-2022) among the COVID-19 & Chronic Conditions (C3) cohort and to investigate any disparities in use by sociodemographic factors. Design, Setting, and Participants This cohort study uses data from the C3 study, an ongoing, longitudinal, telephone-based survey of participants with multiple chronic conditions. Participants were middle aged and older-adult primary care patients who had an active portal account, recruited from a single academic medical center in Chicago, Illinois, between 2019 and 2022. Data were analyzed between March and June 2022. Main Outcomes and Measures Outcomes of portal use (ie, number of days of portal login by year) were recorded for all study participants by the electronic data warehouse. All parent studies had uniform sociodemographic data and measures of social support, self-efficacy, health literacy, and health activation. Results Of 536 participants (mean [SD] age, 66.7 [12.0] years; 336 [62.7%] female), 44 (8.2%) were Hispanic or Latinx, 142 (26.5%) were non-Hispanic Black, 322 (60.1%) were non-Hispanic White, and 20 individuals (3.7%) identified as other race, including Asian, Native American or Alaskan Native, and self-reported other race. In multivariable analyses, portal login activity was higher during the 3 years of the COVID-19 pandemic compared with the 2019 baseline. Higher portal login activity was associated with adequate health literacy (incidence rate ratio [IRR], 1.51; 95% CI, 1.18-1.94) and multimorbidity (IRR, 1.38; 95% CI, 1.17-1.64). Lower portal activity was associated with older age (≥70 years: IRR, 0.69; 95% CI, 0.55-0.85) and female sex (IRR, 0.77; 95% CI, 0.66-0.91). Compared with non-Hispanic White patients, lower portal activity was observed among Hispanic or Latinx patients (IRR, 0.66; 95% CI, 0.49-0.89), non-Hispanic Black patients (IRR, 0.68; 95% CI, 0.56-0.83), and patients who identified as other race (IRR, 0.42; 95% CI, 0.28-0.64). Conclusions and Relevance This cohort study using data from the C3 study identified changes in portal use over time and highlighted populations that had lower access to health information. The COVID-19 pandemic was associated with an increase in portal use. Sociodemographic disparities by sex and age were reduced, although disparities by health literacy widened. A brief validated health literacy measure may serve as a useful digital literacy screening tool to identify patients who need further support.

Objectives The global prevalence of multimorbidity is increasing as the population ages. As individuals get older, they are likely to develop multiple chronic conditions, and nearly two-thirds of older adults in the United States are estimated to experience 2 or more chronic conditions. The present preregistered study examined whether multimorbidity was associated with longitudinal changes in health-related quality of life (i.e., anxiety, depression, and physical function) and whether these associations were moderated by sociodemographic factors (i.e., sex, race, marital status, income, insurance, and education). Methods Data come from the Health Literacy and Cognitive Function Among Older Adults Longitudinal Study (LitCog), a prospective cohort study of English-speaking older adults (N = 900). At each measurement occasion, participants reported anxiety, depression, and physical function using the Patient Reported Outcomes Information System, chronic conditions, and sociodemographic characteristics. We employed multilevel growth models to estimate changes in health-related quality of life, with multimorbidities as a predictor and sociodemographics as covariates. Results Results indicated that individuals with multiple chronic conditions reported persistently high levels of anxiety and depression, and worse physical function. We found evidence for racial health disparities, such that individuals who identified as non-White experienced worse health-related quality of life as multimorbidities increased, relative to White participants. Discussion These results contribute to the current conversation about the long-term impacts of structural and systemic barriers experienced by minoritized groups. We further discuss the public health implications of multimorbidity in older adulthood.

Compared to pre-pandemic telehealth utilization, rural telehealth utilization has increased 1700% for some rural healthcare facilities. Yet, rural older adults remain slower to adopt telehealth, partly due to technical knowledge barriers. To identify practical solutions to overcome these navigation barriers for rural older adults, perspectives about telehealth implementation by older adults are necessary but remain a gap in research. To this end, this project adopts a user-centered design approach to develop a relevant, end-user-informed telehealth navigation tool for rural older cancer survivors with cancer-related distress through a community advisory board (CAB). We identified and selected CAB members from May-September 2022 from community-based organizations (CBOs) serving rural counties and zip codes in northern and central Illinois. CBOs were identified through internet search or snowball recruitment. Operating CBOs and interested community members with rural health interests received an email or telephone call about the CAB to review the roles and responsibilities of the CAB and confirm their interests. To date, over 30 CBOs in rural Illinois were identified, contacted, and mapped according to their rural health resources. We conducted two in-person and three virtual orientations. We identified one mental health professional, one older cancer survivor, one community member, three social workers/patient navigators to join the CAB. Preliminary barriers to telehealth utilization identified through ongoing CAB meetings include inadequate/inaccessible internet infrastructure, variable technical literacy, and concerns about trust-building and confidentiality. Ultimately, community advisory boards can be an effective approach in bridging community and academic partners to improve telehealth navigation for older rural adults.

In a nationwide survey, rural clinic uptake of telehealth utilization increased by 70% compared to pre-pandemic utilization. Despite advancements in tele-delivered cancer care for rural residents, older adults are slower to engage the technology; yet examinations of the challenges rural older cancer survivors face when incorporating telehealth into complex cancer care are limited. Guided by the Andersen Healthcare Utilization Model, we qualitatively examined barriers and facilitators of telehealth utilization for rural older cancer survivors. Ongoing interviews began in March 2022. We purposively sampled telehealth-using rural older cancer survivors, caregivers of rural older cancer survivors, and healthcare professionals that served this population. The interview guide probed participants regarding telehealth utilization for cancer and survivorship care. We used thematic analysis and deductively coded to the Andersen Model constructs. Preliminary findings are based on six rural older cancer survivors, caregivers, and healthcare professionals. Most participants were Non-Hispanic White, had at least some college, traveled greater than 31 minutes to an oncologist, and used their cell phone or computer to access telehealth. We coded similar perceptions between survivors, caregivers, and healthcare providers. Emergent themes included (1) Telehealth provided critical and necessary services, (2) Existing technological literacy and infrastructure enabled telehealth uptake, (3) Geographic isolation related to the rural environment impaired participant’s ability to access telehealth-delivered care, and (4) Real-time provider-patient communication at critical points in participants’ care facilitated telehealth utilization. Overall, participants reported that telehealth was useful for overcoming barriers common to rurality and often a suitable strategy to deliver cancer care.

Health equity, the absence of unfair and avoidable differences in health among social groups, has garnered mainstream attention due to recent civil unrest in communities, yet remains an elusive goal for aging health researchers. Community-engaged research is one approach to improve older adult health equity. Community-engaged research involves partnerships between researchers and community organizations, community health centers, and community members to pursue a common goal. To shift the traditional paradigm of investigator-led and -implemented research, community-engaged principles emphasize the co-production and ownership of knowledge. While community-engaged research has a successful track record in facilitating health disparities research, far fewer partnerships have been formed to 1) elevate the voices of older adults and 2) investigate and act on root causes of health disparities in older adults. To advance the practice of community-engaged research focused on older adult health, this symposium presents five community-academic partnerships elevating older adult voices from diverse groups and health conditions while simultaneously describing engagement strategies across the research process. First, Grant outlines processes for leveraging community representatives as partners in developing multilevel interventions for older cancer survivors. Second, Filec describes a multi-year community-engaged research journey that culminated with a study investigating the health impacts of a home repair program. Third, Singh details a user-centered design approach through a community advisory board to develop a telehealth navigation tool. Fourth, Lewis-Thames describes a community-based qualitative assessment capturing telehealth utilization among rural older cancer survivors. Lastly, Oladejo presents the community-driven development of a culturally-tailored dementia caregiving program for Black caregivers. This is a Community-Engaged Research Interest Group Sponsored Symposium.